Talking About Autism With Laura Arnstein Carpenter, PhD

Autism Spectrum Disorder is a developmental disorder that is frequently mentioned but poorly understood. This episode’s guest, Dr. Laura Arnstein Carpenter, specializes in Autism Spectrum Disorder and has much to offer us in understanding and clarifying this disease.

Dr. Carpenter is a professor in the College of Medicine Department of Pediatrics. She received her PhD from Binghamton University and completed her residency and fellowship at the Medical University of South Carolina.

Read The Transcript

[00:00:07] Loretta Lynch-Reichert: Hello everyone and welcome to the Medical University of South Carolina, Science Never Sleeps Podcast. Our conversation today focuses on a developmental disorder that is frequently mentioned but poorly understood, autism. Or more appropriately, Autism Spectrum Disorder, ASD. Fortunately, our guest, Dr. Laura Arnstein Carpenter specializes in autism spectrum disorder and has much to offer us in understanding and clarifying this disease.

Dr. Carpenter is a professor in the College of Medicine Department of Pediatrics. She received her PhD from Binghamton University and completed her residency and fellowship hereat the Medical University of South Carolina. Welcome, Dr. Carpenter.

[00:00:54] Laura Arnstein Carpenter, PhD: Thank you for having me.

[00:00:55] Lynch-Reichert: Our pleasure. I would imagine any parent who is told their child has autism would feel the world has turned upside down. So let's see if we can diminish some anxieties and dispel some rumors. As someone with quite a bit of clinical and research expertise on this matter, how would you define Autism Spectrum Disorder? And how prevalent is it?

[00:01:18] Carpenter: So we know that about one in fifty-four kids has autism. But it's four times more common in boys than girls. So there are many more boys on the spectrum than there are girls. Autism is comprised of two sets of symptoms. So we have problems with social communication and then unusual behaviors, restricted or repetitive behaviors. So the social communication problems really run the whole gamut. From not being interested in other people, not being aware of other people. To the other extreme of being very interested in other people but just not having the skills necessary in order to interact and then the restrictive repetitive behaviors can be anything from unusual motor movements, obsessive interest, sensory differences or behavioral rigidity. That causes a lot of problems for people on the spectrum.

[00:02:05] Lynch-Reichert: That's a wide variety of symptoms. That’s really quite interesting. Why are boys more susceptible to it if you will?

[00:02:15] Carpenter: So we think that there are some biological protective factors along with some social factors. So from a biological perspective, we know that girls on the spectrum have more family members with autistic features. They’re more likely to have genetic changes associated with autism and they're typically more impaired than boys on the spectrum. So that tells us that there may be some biological protective factors where girls have to have more risk factors in order to develop autism. I also think, you know, that there are some social factors involved. When someone sees a girl that's obsessed with Disney princesses, they might not immediately think autism but when they see a boy that’s obsessed with trains, maybe one of their first thoughts in autism. I think people have a tendency to think of little girls as shy rather than maybe truly disinterested in social interaction or lacking in social skills. And then finally, I also think there are problems with our diagnostic test.

So if you know that, you know, there are four times as many boys with autism as girls then you have to think that our diagnostic tests were normed mostly on boys.

[00:03:29] Lynch-Reichert: Oh wow, yeah.

[00:03:30] Carpenter: And so, they're really looking for boy symptoms. So I think there are some, you know, under-identification of girls along with the truth that girls just don't develop autism at the rate that boys do.

[00:03:43] Lynch-Reichert: That is--that's fascinating. I had no idea. I have heard many theories on the cause of ASD. You see it in social media. You just hear it from the lay audience. You hear it from parents. Everything from vaccines to the age of parents to genetics are causes for autism. What are the common misconceptions and what does your research indicate?

[00:04:07] Carpenter: So first of all, there has been millions and millions of dollars spent looking at this vaccine autism connection and there really is no connection between autism and vaccines. What you're seeing is our brains tend to look for patterns. So we tend to give our babies a lot of vaccines around 18 months and that's when symptoms of autism first become apparent.

So of course, you're going to see this, like, correlation between giving your baby a vaccine and your baby developing symptoms of autism. Even if it's not causal. We know that autism is caused by a variety of genetic factors and environmental factors. We have a much better understanding of the genetic side than the environmental side. So from a genetic standpoint, there are more than 150 single-gene changes that seem to be associated with autism.

[00:05:01] Lynch-Reichert: One-hundred-and-fifty-- say that again please.

[00:05:03] Carpenter: There are more than 150 single-gene changes that are associated with autism. More than 20, what we call, copy number variants associated with autism. But the amazing part is that we think that there are 100 more to still be discovered. The truth is that most scientists at this point think that we're not just looking at one autism. We’re looking at multiple autisms. And that there are many different pathways to autism and if we can kind of figure out which pathway a specific child took than we could do a better job of matching a treatment to their type of autism.

[00:05:43] Lynch-Reichert: Is that almost like--just to clarify in my mind, is that almost like there is the big word cancer but then there are many cancers, and they all have different treatment options, and they have different causes.

[00:05:56] Carpenter: Yeah so, it's the same idea as like a precision medicine or like a personalized medicine. Right now, when I make a diagnosis of autism in a two-year-old, I'm pretty much making the same recommendations for every single child. With you know, some small variations. We know that not all the treatments work for every child but we don't know which kids which treatments are going to work for. If we can figure out all of those different genetic pathways, then I think we could do a much better job of supporting kids and supporting families.

So, the other side of things, that's the genetic side, the other side is the environmental side. We know that there are both genetic and environmental factors because we have identical twins who are, what we call, discorded for autism. Meaning that one has autism and the other doesn’t. It’s very rare. These are babies with the same genetics are coming out with quite different, you know, what we call phenotypes presentations. So we think in those cases that there are some sort of environmental causes going on that, you know, potentially change the expression of genes. So some of the things that we know for sure are that older parents and particularly older dads have a much higher risk of having a child with autism. We know that being born early confers a risk of having autism. So being a pre-me. But there are so many other risk factors that we don't understand. Like what could cause those genetic changes in the environment and what we even mean by environment. Do we mean smog or pollution. And/or do we mean epigenetic effects. So things that have happened maybe to your mother or to your grandmother and now are being passed down across generations.

[00:07:446] Lynch-Reichert: Who does that kind of research? Is it a neurologist? Is it a ped--who's doing that kind of research into what's happening physically?

[00:07:55] Carpenter: So it depends on, you know, what level. So when you're talking about these really big environmental studies, you've got to have epidemiologists on board because they understand how to look at research, you know, across large numbers of people. When you're talking about this genetic research you have to have people with expertise in genetics who can look at a genome and identify where the changes are happening and then see those changes across lots of different kids.

[00:08:23] Lynch-Reichert: What is the long-term prognosis for adults with autism?

[00:08:27] Carpenter: So I think we've all heard about adults that have had really good outcomes. Like, you know, you think of these really famous guys, like tech guys that have had these amazing careers and have contributed so much. I think in those cases what's happened is that those intense interests that we see in autism, that hyper focused or sticky attention has really been channeled in the right direction, right. These folks have learned, you know, have really focused on a particular career path, maybe they think a little bit differently, they think outside the box so they're able to see things the rest of us don't see. But the truth is that a lot of my patients are still really struggling in adulthood.

So you know, it's not that their symptoms get worse overtime. In fact, most people with autism are continually making improvements, they're learning social skills, their symptoms are not getting worse but what's changing are the environmental demands, right. So when you're a third grader people don't expect as much from you in terms of like complex social interactions, as they do when you're a college graduate in the workforce. So right now, I think, you know, along the way in school we're not doing enough to help kids learn those soft skills, those social skills that they need to have in order to be successful10, 15 years down the road when they enter the workforce. So even my patients that are graduating successfully from high school, graduating successfully from college it’s kind of like a now what? You know? They get a job or they're not able to get a job or they do get a job and they can't maintain that job. Certainly, there are some innovative programs out there to try to support those kids. But it's not nearly enough and you see a lot of people on the spectrum who are either completely unemployed or dramatically under employed. So we're talking about a person with a bachelor's degree in computer science who's stocking shelves at Walmart. You know?

[00:10:28] Lynch-Reichert: Yeah, that's really tough.

[00:10:30] Carpenter: And I think, you know, especially in adults we also have this problem of under-identification, right. Because 20 years ago we thought of autism as this very narrow disorder where kids were extremely impaired and had these very specific sets of characteristics. Now we're doing a much better job of picking up autism in a range of people. So kids who are extremely bright, gifted, but still have social problems and unusual behaviors. And then kids at the other end who have pretty significant cognitive delays. I think in the past, those delays would’ve overshadowed the symptoms of autism. Now we're recognizing autism in those folks as well. But if you're talking about you know, people in their 20s, 30s and beyond the chances that they would've gotten a diagnosis as a kid is very low.

[00:11:18] Lynch-Reichert: Wow.

[00:11:19] Carpenter: So that makes it even harder to get support services. If you've never even been diagnosed. There’s not a lot of people out there who do adult diagnoses. So I think there's multiple facets to this crisis. The fact that there's not support available, particularly for people who don't have intellectual disabilities, right. If you have an intellectual disability, there’s a whole system that can help you get jobs and get supported employment. If you don't have an intellectual disability, systems of care aren't there. Then you don't have a diagnosis. You’re certainly not going to get access. You might not even know that you don't have a diagnosis. So something else is going on. Perhaps you've been told your whole life that, you know, you're just a bad person. Or that you don't try hard enough. So when teens and adults gets a diagnosis for the first time usually their response is incredible relief.

[00:12:12] Lynch-Reichert: I would imagine. I would absolutely imagine. How do you go about diagnosing?

[00:12:18] Carpenter: So let's start at the point of first concern you want to go talk to your pediatrician. They’re always going to be your first contact. Your pediatrician should be able to get you to a provider who can do further evaluation. If this is a very young child you do not want to wait to get a diagnosis in order to start treatment, right. So some of our waitlists are six months,12 months long, so you don't want your child just sitting around not getting help during that time. So in South Carolina you can refer--anybody can refer a child under three to a program called Baby Net. Where kids can get free, early intervention without a diagnosis. And then if the child is over three they can get referred to their local school district and we have special education teachers and therapists who are trained to help kids with autism. Again, you don't need a diagnosis necessarily in order to get services through that school district. So while you're waiting to get the official diagnosis you can be getting started on getting help.

Once a child comes to, let's say, MUSC to Developmental Behavioral Pediatrics for an evaluation we’re going to do a number of things so first of all, we want to do a physical exam. We want to rule out are there other things going on that might be contributing? Can this child hear? And then from there we're going to want to do some structured behavioral observations. So how does the child play? How do they interact with us? How do they share their attention and their enjoyment? We have some specific tests that look at those skills. We also look at where they're at developmentally. So, if a child is extremely delayed perhaps it's not autism but just kind of a global developmental delay. Maybe it's just a language delay. I mean, we want to make sure that we're ruling out anything else that can be doing on and potentially masquerading as autism. In older kids I think it's really important to get to a specialist who has expertise in how autism presents in older kids. If it's, you know, sort of your first diagnosis. In older kids, you know, if it's a first-time diagnosis for a teenager or for an adult, you really want to make sure you're seeing a specialist who knows how autism presents in teens and adults. That’s particularly true if you're talking about a teenage woman, a teen girl, or an adult woman because a lot of people just haven't had that experience. What you're looking for in a child is going to be very different than what you're looking for in like a teenager or an adult. So that might be a different skill set.

[00:14:52] Lynch-Reichert: Okay, that's good to know. I do know, I have some friends who have an autistic child and I think he's almost 30 now. But back in the day, they couldn't identify what his problem was, so they never had access to the resources they needed or the funding, government funding to help in certain matters. Finally, finally they got that. It’s kind of a tragic situation. So what you're suggesting is really important for folks. The moment they think there's any kind of issue, go ahead and get all the testing and evaluation that you can. It's, you know, it's definitely worth it.

[00:15:32] Carpenter: Yeah, we've gotten to the point where the autism diagnosis is kind of a very high stakes diagnosis. A lot of people who come to me for an evaluation are absolutely seeking a diagnosis because they know there's something going on with their child and they want help. Sometimes if you don't get the diagnosis then no help is available. Which you know, shouldn't be the way our system works, right. Every child should be able to get the help that they need but unfortunately, we've designed this medical system where you have to have a very specific diagnosis in order for your child to get certain therapies. So it's become a very high stakes situation.

[00:16:10] Lynch-Reichert: I can imagine. What are some of the earlier signs that your child might be at risk for autism?

[00:16:15] Carpenter: So what's really interesting, we have this whole area of research where they have followed kids at three months, six months, nine months, twelve months and looked at what some of the earliest symptoms of autism might be and tried to figure out what distinguishes those kids who go on to develop autism from those who don’t. What’s really interesting is that there doesn't seem to be any reliable indicators, at least behavioral indicators, prior to 12 months of who's going to go onto develop autism. So it's really hard. At this point, we cannot make a diagnosis of autism in a six- or nine-month-old baby. Maybe someday we'll be able to, I hope so cause I think that would change a lot of things.

At this point, where you really start to see those trajectories, divide is around 15 or 16 months. At that point, a lot of what you're looking for is social interaction. So your 15 or 16 month old baby should be looking at you with warm, joyful expressions, making eye contact, imitating facial expressions. Even if the baby's not talking yet. We’re also looking for gesturing. So we don't focus so much on language anymore because lots of kids are delayed in speech. Kids develop speech at all different times, and I think if you just focus on language, you capture too big of a group of people to be concerned about. But even kids who are delayed in speech usually use gestures appropriately and actions with objects. When I say gestures, I mean things like blowing a kiss, waving, saying "Shh" and pointing seems to be particularly important. When you want to point something out to your child, when you want to share your attention and you point at something they should look at what you're looking at by about 15 or 16 months and then they should also start to share their interest with you in the same way. So pointing at things they want or pointing at things that they're interested in. So if your baby's not pointing at 15 or 16 months, if they're not looking you in the face, if they're not following your point, if they're not responding to their name, those are all huge red flags for autism. It doesn't mean it's necessarily autism. There’s lots of things that we want to look at and evaluate. But certainly, reason to go talk to your pediatrician.

We do ask that all pediatricians screen for autism at the 18- and 24-month visit. So that's supposed to be part of the normal well child visit. The reason we do it twice is because there does seem to be this percentage of kids, it's about 20 percent of kids, who go on to develop autism who seem to develop pretty typically up until 18 months and then start to actually lose social skills...

[00:19:05] Lynch-Reichert: Wow.

[00:19:06] Carpenter: ...between 18 and 24 months. So if you only screen at--you want to screen at 18 months cause you want to pick kids up early. But if you only, do it then you're going to miss some kids who lose those skills. It’s very rare for kids to lose skills after 24 to 30 months. So there are cases where it happens. I don't think--I think there are probably other things going on. It’s very rare so I don't want parents to sit around thinking "My child's going to suddenly disintegrate in front of me." That's pretty rare. If it's going to happen it's usually between 18 and 24 months.

Another piece of research that just came out in the last couple of years that I think is fascinating is they have this cohort of children that were followed very closely from infancy. They found that there are kids that did not meet criteria for autism at three who did go on to meet criteria for autism at age eight. So it does seem like there are some kids whose symptoms are so subtle that even when they're evaluated by the greatest experts in the world, those are the people doing this study, they were still missed at three and then picked up later.

So, what I'm seeing now is a lot of kids who are getting maybe psychiatric care and someone says, "Do you think this child might have autism? “And people say, "Oh no, no we already ruled it out. He already had an autism evaluation. “But I think it's really important to circle back and perhaps, you know, consider whether it might be autism even if it's a few years down the line.

[00:20:38] Lynch-Reichert: Does that suggest that if it is autism down the line that it's a very subtle form of it? Or does it come on pretty-- can it come on pretty strongly in between?

[00:20:49] Carpenter: No, I think in those cases it's usually a more subtle form. Like I mentioned earlier, so much of impairment is dictated by our environment. So like I have terrible handwriting. If I was forced to handwrite all my research reports, I would be incredibly functionally impaired. You know, I can type everything. So my functional impairment, nobody even sees it. That's the same case with autism. If the environment is supportive and sometimes those impairments just aren't even there but it's when the child gets to a transition. They go to middle school; they go to high school. A lot of times when they go to college and they're on their own for the first time and we realize how much scaffolding has been provided by the school or the parents. That we're like "Oh my goodness, there is something going on here."

[00:21:39] Lynch-Reichert: That's an excellent point. If you have a child that was evaluated and have some form of autism, as a parent, what would you suggest would be the ideal environment to support them on this journey?

[00:21:54] Carpenter: So for little kids, most little kids with autism are going to benefit from intensive one-on-one intervention. That’s going to include speech therapy, occupational therapy and something called applied behavior analysis therapy or ABA. We know that if you look at the broad literature the kids that do the best are those who their treatment started early, and they got a lot of hours of one-on-one quality treatment. That’s not to say if your child doesn't get diagnosed till later there's no hope but on the other hand, we know that the brain is more plastic earlier in life. So if we can get those treatments started earlier I think it's much better and those are the kids that seem to have the best outcomes.

As kids get older, we're going to be focusing on different things. A lot of times our treatments focus on some of the comorbidities that go on with autism. We see a lot of depression, anxiety, disordered eating. You know, social skill deficits in older kids. That tends to be the focus of treatment as kids get older. We found that cognitive behavior therapy, which I'm sure everybody has heard about for anxiety and depression, we found it works incredibly well for kids with autism who also have anxiety and depression. We also know that there are some social skills interventions that can work really, really well in helping kids sort of make progress in social skills. We have a lot of medicines now that are very good at helping some of the -- kind of -- associated features of autism. Whether it's temper tantrums, irritability, attention problems, hyperactivity, sleep problems, we have medicines that are really good for helping those areas of concern.

Unfortunately, we don't have many medicines that treat the core symptoms of autism.

[00:23:48] Lynch-Reichert: I was going to ask you about that. Yeah, is there a pharmacology that can be used.

[00:23:54] Carpenter: So there's a lot of research going on in trying to find something that will help kids, you know, help improve social skills. So far, nothing has been great. There’s been a lot of hope and then, you know, a lot of kind of failures. But I think it might be out there. I think folks are continuing to look.

One of the debates that's come up in the field recently is whether or not you actually treat those restricted repetitive behaviors. So I think everyone can agree that treating social skills probably makes sense. You know, the treatment of those restrictive repetitive behaviors do we want to decrease hand flapping and what difference does it make. Do we want to treat intense interest. Is that going to make a difference in the child's life. I think it really comes down to functional impairment, right. If it's a symptom that's getting in the way for the child, then we want to give them relief. If something that is uncomfortable for them that they don't like.

On the other hand, you know, we’ve moved away from treating symptoms just because they make the child look different than anybody else. Hand flapping is a great example. Unless it's something that's so dramatic that it's getting in the way, which I can't even think if I've ever seen a case like that. We’re not addressing hand flapping directly. Often, it's either a way for the person to express excitement or a coping mechanism. So to take that away from them probably isn't helpful. We’re starting to look at these symptoms differently and think about what do we really want to treat here. Eye contact is another one that's real controversial. Like, should we be forcing kids to make eye contact if that's something that doesn't come naturally to them or is maybe painful for them. I think there's a lot of people who would argue that teaching children to make eye contact is really for the benefit of everybody else, and not for the benefit of that particular child.

[00:26:01] Lynch-Reichert: I think as a parent you hear what the expert says, but you're saying, "Yes, but my kid, socially everybody makes fun of him,” or something, and so their natural inclination is probably to protect, or to insist on certain things. So, how do you talk to a parent like that who probably already feels some guilt. “My child has autism, what do I do? How did I make that happen?" Until they understand better what the disease is about, how do you help a parent cope with that? When you're saying, "Hey, this is a comfort to him to flap his hands," and the parent's going, “But, it makes him look socially awkward, and people make fun of him, and then make judgments about him.” So, how do you deal with that?

[00:26:43] Carpenter: Yeah, I think parents are at different points on their journey with autism, right? Like a lot of times when parents come in with their 18 or 24-month-old baby, they’re ready for that baby to be fixed.

[00:26:54] Lynch-Reichert: Yeah.

[00:26:55] Carpenter: "I want this to be over, and can you tell me exactly how long it's going to be until this whole autism thing is done? “By the time you get up to 5 or 6, you're at a very different point. Now you've had a chance to see your child's strengths and what makes them unique, and sometimes there are things that you don't want to change about your child, because you've realized that this is like--these things are gifts for them. So, I think people are at very different points kind of on their journey. The point where I see parents getting really anxious is around the transition to middle school. So, I think, up until middle school, kids are very tolerant of other kids' differences. Sometimes they don't even notice. I’m always amazed with what my own children didn’t notice when they were in preschool, or kindergarten, or early elementary school. They’re just other kids to them.

Now that we mainstream so many kids with disabilities, there are so many kids that are different in so many wonderful, unique ways already in the classroom. Things tend to shift a little bit at middle school, and that's if you're going to see bullying, that tends to be where you start to see it and so as parents approach that transition to middle school, there’s a lot of anxiety, like, "Oh, my gosh, we still have all these difficulties.” Like, "Well, how are we going to support our child and sort of make things better?” So, I think you kind of have to target your conversation to where the parent is and what their goals are for their child.

[00:28:30] Lynch-Reichert: That makes absolute sense. Does MUSC have any kind of program where you consult for the educational system?

[00:28:37] Carpenter: It's really tricky, so you know, the public education system is at a point where they can't allow external people to come in, because we haven’t gone through their vetting, which is very similar to how MUSC is. It's not like we can just bring in anybody off the street and have them observe us, or kind of consult with us. They would have to go through our vetting process. So, it's true in both settings, but I used to do a lot more in-school observations, and attending IEP meetings, and that's become a lot harder, because schools have kind of tightened up their policies for very reasonable reasons.

[00:29:12] Lynch-Reichert: Yeah, sure.

[00:29:15] Carpenter: But I think what's happened, partly because of that, is that children's therapeutic programs have become very fragmented. So, you have your speech therapist who’s working with the child outside of school, and the speech therapist who's working with the child inside of school, and then you have their ABA therapist who's working with a child outside of school, and none of these folks are necessarily talking to each other. I have definitely seen cases where one therapist is working really hard on signs, and another therapist is working really hardon some other augmentative communication system, like an iPad, and the parents have no idea how the iPad works because they've never been shown how the child works on it. So, everybody is doing something different, and when you're talking about a child who already has difficulty learning, right, we know that this child takes longer to learn, we need to be more thoughtful about their time, and make sure that we're all coordinating. If we're going to use signs, we all need to know the signs, the sign language that that child is using...

[00:30:15] Lynch-Reichert: Right.

[00:30:16] Carpenter: ...so that we’re being respectful of the time that they have in therapy. So, I think there are lots of protections in place for people's privacy, both in the hospital setting, and the educational setting, and the therapeutic setting, but sometimes that gets in the way.

[00:30:31] Lynch-Reichert: Sure.

[00:30:32] Carpenter: There's also not insurance funding for folks to collaborate with each other.

[00:30:37] Lynch-Reichert: Oh, wow, I didn't even think about that.

[00:30:37] Carpenter: What insurance is going to payor me to sit around with the school, to sit around with the private therapist, and all come together, and come up with a sort of cohesive treatment program for a child?

[00:30:50] Lynch-Reichert: Makes sense, yeah. How do teachers manage it then I mean, I know that they--I actually have a friend who specializes in autism, teaching autistic children. Would you know whether that's a curriculum, a program of study that that teacher went through that’s pretty standardized across the country, or how does that work so that each child is ensured to get that kind of support at school?

[00:31:14] Carpenter: So, I think it's hugely variable, right? So, if a teacher who's being trained now, I would guess get a lot more instruction, even if they're going through regular early childhood education programs, they’re going to get a lot more instruction in how to work with kids with disabilities, because they're going to be in their classes.

[00:31:30] Lynch-Reichert: Right.

[00:31:31] Carpenter: You're going to have kids with Down syndrome, and ADHD, and autism in those mainstream classes. Whereas 25 years ago, those kids simply were not in mainstream classes. Mainstream teachers didn't need to know how to support them, because they were in special education classrooms.

[00:31:48] Lynch-Reichert: Right.

[00:31:50] Carpenter: I think a lot of teachers are really good about going, even if they're older and went through training years ago, like I did, they’re really good at going to these continuing education training programs and learning, because they have to, right?

[00:32:05] Lynch-Reichert: Right.

[00:32:06] Carpenter: Again, these kids are going to be in your class. If you're teaching a mainstream class, you’re going to have kids with learning differences, behavioral differences. At this point, very few kids are shuttled away into special education separate classrooms. It's just not the model we're using.

[00:32:25] Lynch-Reichert: Yeah, probably those that would be disruptive, or something might be shuttled out.

[00:32:29] Carpenter: It depends a lot on the district, and on the age of the child.

[00:32:32] Lynch-Reichert: Okay.

[00:32:33] Carpenter: But really the value at this point is bringing kids into the mainstream. I think there's a lot of difficulties, and a lot of challenges, but I can tell you, the benefits that I've seen even with my own children is the tolerance, right? Like when I was in school, I never saw a person with a disability, and I remember when I would see someone who was visually impaired or hearing impaired, it was almost scary.

[00:32:58] Lynch-Reichert: Yeah.

[00:32:59] Carpenter: Right, I had no experience with those people. But now, those people are my colleagues, right?

[00:33:06] Lynch-Reichert: Yeah, yeah.

[00:33:06] Carpenter: We have colleagues who are visually impaired. We have colleagues with cerebral palsy. I have many colleagues with autism because of what I do, I have friends with autism. So, my perspective has changed through that exposure, and I'm so thrilled that for my kids that’s been baked in from the beginning of their education, and I'm not going to pretend like there's no problems with mainstreaming kids. There are certainly challenges, but there are real benefits.

[00:33:34] Lynch-Reichert: Absolutely, and for the autistic person, because I can imagine if they feel a certain amount of acceptance, that can only help them as they move forward on that journey of autism, and whatever treatments they're getting. I think that's wonderful, plus the fact that you brought up something earlier, which I truly believe in. So, you have people with autism that we know, the high-tech guys I think, and they bring something to the table because they have this incredible brain activity going on, it's kind of fascinating.

[00:34:04] Carpenter: It's interesting, we used to think that autism was that savantism, which is what Dustin Hoffman has, right, like remember how the matches fell over the floor, and he's like, "There's 154 of them," or something. We used to think that savantism was very common in autism, and it's turned out that it’s no more common in autism than it is in the general population.

[00:34:24] Lynch-Reichert: Oh, okay.

[00:34:25] Carpenter: So, in the general population you do find people who are just amazing and can look at matches on the floor and count how many there are. What’s more common in autism is that you have a specific focus on something, so if your focus is on maps, sometimes you get a high level of achievement in the area of geography and knowing about maps. Or if you're spending hours a day practicing the piano, or drawing, of course you get much better at it. So, there is certainly savantism in autism. I have seen it. But it doesn't seem to be something specific to autism.

[00:34:58] Lynch-Reichert: Okay. Let's address another, I would think is disinformation, is when we have seen in the news when some violence has occurred, the perpetrator has been--they've said, "Oh, they were autistic, “or something, and I don't know how strong those diagnoses were, or how real they were, but I know that at one point there was discussion about people with autism are violent. Can you kind of dispel that, or give us at least a clarity on that?

[00:35:35] Carpenter: So, first of all, I think the most important statistic to note is that people with autism are much more likely to be the victims of crime than the perpetrators. My team has done quite a bit of research looking at interactions between people with autism and the department of juvenile justice, as well as in SLED, the South Carolina Law Enforcement Division, and what we found is that people with autism don't seem to have more interactions with those systems.

Unfortunately, the other finding we have is that once people with autism are in the system, they are not treated any differently, so we're not seeing a whole lot of differences in terms of diversion, maybe considerations for sentencing. It’s certainly possible that at the point that the person is arrested there may be different treatments, different ways that the police handle those kind of interactions for people with autism, versus other folks.

[00:36:33] Lynch-Reichert: Yeah.

[00:36:36] Carpenter: That wasn't in our data set, that kind of very early difference. But, once they're there in the system, there doesn't seem to be any special consideration for autism, and I certainly have seen that in my own legal work. So, when I do legal consulting, what I'm told by the lawyers is that you can say that a perpetrator has autism, and a jury will say, "So what? What difference does that make? They still committed the crime.” So, my research sort of lines up with what I have seen in my own life. I also have had patients who have been arrested for symptoms that are clearly related to their autism.

[00:37:25] Lynch-Reichert: Oh, yeah.

[00:37:26] Carpenter: So, there are zero tolerance policies in school for what's called sexual harassment, and if you have a little boy who touches a little girl, because he doesn't understand boundaries, or for some other reason, maybe he's a little bit preoccupied with her. We have had patients that have been arrested by the police for behaviors like that, which is not useful, right? Like if you have someone with a skill deficit, they do not understand personal space, they do not understand social rules, punishing them isn't going to change anything. What we need to do is we need to teach them those social skills that they're lacking.

[00:38:07] Lynch-Reichert: Right.

[00:38:09] Carpenter: I don't speak Japanese. You could punish me all day long for not speaking Japanese, and it wouldn't teach me Japanese. You would have to take the time to teach me that foreign language, and the same thing goes for kids with autism, where social norms, social rules, the way you're supposed to behave in public. A lot of these kids are super smart, they will learn if you teach them, but you have to take a teaching approach, and not a punitive...

[00:38:37] Lynch-Reichert: Right.

[00:38:39] Carpenter: ...and certainly not a legal approach. That’s not going to help anybody.

[00:38:42] Lynch-Reichert: So, that suggests to me that--You've talked about having children evaluated between 18 and 24 months, and then maybe at 8 years old if they exhibit, but those children in 1st, 2nd, 3rd grade, whatever, if it's not common to do that kind of evaluation, how would one be able to--? I mean, I'm trying to think of when a child does something like that, if the teacher knows they’re autistic, you would hope that there would be standards in place to manage that.

[00:39:15] Carpenter: Yeah.

[00:39:16] Lynch-Reichert: But it doesn't sound like there are, I think that's what I'm trying to get to you, do you know?

[00:39:19] Carpenter: I think it changes people's perspective. So, when a child doesn't have a diagnosis, you might think that they're being oppositional, and so the instinct might be to go to a much more rigid style. Lots of time-outs, lots of consequences, “You need to stay in a recess," versus once you understand the child's diagnosis, you're going to go toa much more remedial style. Like, "Okay, when we get upset, we don't throw the crayons across the room. Here’s what you can do.” So, kind of teaching. I think it does move people to change their perspective. One thing I want to say is that we do broad screening at 18 and 24 months. We’re not necessarily looking for kids who are of school age.

[00:40:08] Lynch-Reichert: Okay, got you.

[00:40:10] Carpenter: At that point, it's really when kids start having difficulty that they would come to clinical attention. I don't think there's enough--that the yield would not be big enough...

[00:40:20] Lynch-Reichert: Understood, yeah.

[00:40:21] Carpenter: ...to do broad screening in school-aged children. I think you would capture so many kids with so many different diagnoses T that point, right? You would be capturing, if you did a broad screening in any elementary school, you would be capturing kids with ADHD, and anxiety, and learning problems. So, nobody's recommending broad screening of school-aged kids. But we definitely want to see broad screening in the little kids.

[00:40:47] Lynch-Reichert: Right, right. That makes sense, that's good to know. Do children outgrow this disease? Is that a possibility?

[00:40:54] Carpenter: That's a good question, so there have been a couple of really important studies published, showing that about 10 percent of kids will no longer show observable symptoms by the time they reach middle childhood. So, it'll be interesting to see what happens to those kids down the line. Once they get to college, is it different? But, it does seem like 10 percent of kids have optimal outcomes. A lot of those kids have gotten really good intervention and supports along the way.
For the rest of the kids, the level of support needed is highly variable. So, there are kids who, sure, they have some symptoms of autism, and they've got some sensory differences, but they're pretty easy to accommodate, and they're thriving pretty well. There’s not a lot of functional impairment from the autism itself. Then, we've got kids who've got pretty significant needs, and are going to go on to need supports probably for the rest of their lives, and so we need to be able to plan for all potential outcomes.

[00:42:00] Lynch-Reichert: Absolutely, absolutely. I’ve heard people talk about neurodiversity. Can you tell us about that?

[00:42:06] Carpenter: Yeah, so neurodiversity is a movement that's been put forward by people who have autism themselves. They’ve sort of been the leaders of this movement. The idea is that people are different, and that we need to value those differences, and so I think we've all kind of come to value diversity when we think of racial diversity, or gender diversity, but we haven't thought as much about neurodiversity, and differences in the way that brains process information.

So, these advocates, I think they've really made some important contributions in terms of saying like, "Not everything in autism is pathological, not everything needs to be treated. Some of these features are just differences.” There has been a conflict between some people in the neurodiversity movement who feel that only people with autism should speak for people with autism, and parents who feel that they are obligated to speak for their child who cannot yet speak for themselves.

I think we need to have respect on both ends. Adults with autism are experts on their own autism, and we need to respect that, we need to listen to how they want to be spoken of. So, many adults with autism believe that autism is their identity, so they want to be referred to as autistic adults, not adults with autism. On the other hand, parents are also experts on their own children, and they know what their children need, and we need to have respect for them as well, and so I think right now there’s just growing pains...

[00:43:49] Lynch-Reichert: Right, right.

[00:43:50] Carpenter: ...and having those groups of folks listen to each other, because they both have important things to say.

[00:43:56] Lynch-Reichert: Yeah, absolutely. We spoke very briefly about this, but can you kind of expand on any breakthrough discoveries in terms of treatment, either behavioral or pharmaceutical? Anything specific that you could share with us that might be new on the horizon.

[00:44:14] Carpenter: So, I think that the mainstay of treatment for small children is still that intensive behavioral intervention. We’re looking at different models for delivering it, so there's a lot of folks who reasonably say that a model of having 40 hours a week of one-on-one treatment is not sustainable. How are we going to pay for all of that? Now, certainly there are people, researchers who will look at the economics and say, "Yes, it's very expensive at age 2, but the lifelong savings are well worth it." But, in response to that, there's been some other models that have been developed looking at group treatments.

So, one of them is the Early Start Denver Model. They have a really nice parent training component, a preschool component, and it's less of a focus on that one on one, 40 hour a week that you see in more traditional ABA. I haven't seen a lot of Early Start Denver Model, any Early Start Denver Model here in South Carolina yet, but I would imagine that it's coming. Part of the benefit is that it is something potentially more feasible, and less expensive to be able to deliver It always feels crazy to talk about cost when it comes to—

[00:45:29] Lynch-Reichert: Yeah, that's such a hard--

[00:45:31] Carpenter: Right, like--

[00:45:34] Lynch-Reichert: You're absolutely right.

[00:45:36] Carpenter: I don't know where to fall on that, I mean, I want to devote all the resources we can to helping young kids...

[00:45:43] Lynch-Reichert: Yes.

[00:45:43] Carpenter: ...and not have to consider cost, especially because we do know that the cost savings in the long run can be astronomical, right?

[00:45:53] Lynch-Reichert: Right, and not only that, the social benefit, the productivity, the contribution to society is so much more enriched when these folks have this opportunity, this chance. COVID, how has that affected children being treated with autism? Is it harder to do like telehealth with them, or even tele-education with them?

[00:46:17] Carpenter: Yeah, it's been really interesting, I mean, I think it's just like any other child. Some of my patients have thrived with being at home, and like we've taken away that social component. Now, I don't know how good that is for them in the long run, but school can be a very stressful place for a person with autism, and so if you can learn at home, some of my patients have been super happy.

On the other hand, those kids with more significant needs are not going to benefit from telehealth type of treatment. They’re not going to be able to sit behind a computer and listen to a teacher. I feel like we've been pretty lucky in South Carolina that the majority of therapists continue to see their patients right through the worst of the pandemic.

[00:47:01] Lynch-Reichert: That's impressive.

[00:47:02] Carpenter: Our schools did a good job of getting our kids with disabilities back into school, which I think was the right decision, because otherwise they would've had an entire lost year.

[00:47:13] Lynch-Reichert: Yeah.

[00:47:15] Carpenter: So, I think in South Carolina, I feel that we've actually handled the pandemic really well for kids with disabilities. I think where the difficulty comes in, ah, well there's lots of difficulties, but I've had a lot of difficulty as a diagnostician. There’s been a delay in referring kids, and then once they come to see me, it can be really tricky, because many kids have not been in a structured preschool setting, and so I'm missing this whole wealth of information that I normally would have on kids who are coming in. So, all I can rely on is how the child is doing at home, and how I see them in clinic, and I'm not getting the information from the community that I would normally have, so I think long run, we’re probably looking at delays in identification, which is bad.

[00:48:03] Lynch-Reichert: Yeah.

[00:48:05] Carpenter: I don't know what the trickle-down effect from that is going to be, but it has been interesting to see the kids who have kind of thrived from the pandemic conditions.

[00:48:12] Lynch-Reichert: Yeah, I love that.

[00:48:13] Carpenter: Yeah.

[00:48:14] Lynch-Reichert: Yeah, I'm glad to hear that there is some optimism there.

[00:48:16] Carpenter: Some silver lining.

[00:48:17] Lynch-Reichert: Yeah, for sure. So, let's discuss the research. This is Science Never Sleeps. Tell me about the research going on in autism.

[00:48:25] Carpenter: So, we have a couple of really exciting studies going on here at MUSC. One is called SPARK. This is a national study. We are looking for all of the genetic pathways to autism. So, our eventual goal is to get 50,000 people with autism, as well as both biological parents, and sequence their DNA to understand what is causing autism in different people with different presentations.

South Carolina has been an incredibly successful recruitment site. We’ve been running this study for about four years here in South Carolina. We’ve had so many people participate. It’s super easy, so we collect genetic information through saliva through spit tubes, and we can help people participate, but we also have a way to allow them to participate at home, so they never have to come in and get any exposure to COVID, or anything else they’re concerned about, so we can actually send those spit kits right to them in their homes. So, that's one study that I'm really excited about. We definitely need more diversity in that study, just like any research study needs diversity, but particularly genetic research, right? We need people of color; we need people of different socioeconomic backgrounds. So, we're looking for everybody at this point.

Then, the other studies that we're just getting started right now, we have a number of studies looking at using telehealth to deliver treatment to kids who either are low SES or live in rural areas where it's hard to get access to good treatment.

[00:50:05] Lynch-Reichert: Right.

[00:50:06] Carpenter: So, we're using a treatment model called Parent Child Interaction Therapy, or PCIT, and the goal of this treatment is to help parents manage behavior. So, we're not fixing autism, but we are helping parents with the temper tantrums, and the defiance that you sometimes see in young kids. So, we just wrapped one study looking at that, and we're starting two more, looking at how to deliver that treatment right in people's homes, and people love it. They love that they don't have to, in order to get therapy, they don't have to get in their car, drive all the way to MUSC, find parking. We are there in their home...

[00:50:44] Lynch-Reichert: You bring it to them, yeah.

[00:50:46] Carpenter: ...where they're struggling with their child.

[00:50:47] Lynch-Reichert: Right.

[00:50:48] Carpenter: So, I really believe in this treatment model, and I think it's going to be very successful.

[00:50:53] Lynch-Reichert: Can you tell us how those who would be interested could learn more about these clinical trials?

[00:50:58] Carpenter: Yes, please call us. We are standing by. Our phone number is 843-714-1352, and we would love to tell people more about these studies.

[00:51:09] Lynch-Reichert: I hope everybody takes advantage of that. These are wonderful opportunities to be engaged, and to help your children, and help your friends' children as well. So, Dr. Carpenter, thank you so much for your time and expertise today.

I hope this discussion provides clarity and comfort to our listeners, and support for those diagnosed with autism. Ongoing research is key to treatment options and care. Thank you so much, we really enjoyed having you here today.

[00:51:39] Carpenter: Thank you for having me.

[00:51:40] Lynch-Reichert: Absolutely, and to our listeners, thank you for your continued enthusiastic support. Stay tuned for next month's podcast.